One Step Closer

I had a great night and day with Lucy. She ate a little less then desired during the night but her overall total for the day was a lot higher than the minimum requirement - so we are happy!

The rumor is...Tuesday is the day... I'm still hoping for tomorrow and plan a full campaign to the cardiologists tomorrow during rounds. But the end is in sight!

Chris is taking duty today and tonight. It will be interesting to see how he makes it through the night getting up every 3 hours.

We meet with the doctors tomorrow and we should confirm our for sure going home day - we will keep you posted! Lucy is strong and is rebounding quickly - time to get her home!

Transitional Unit Once Again!

We have officially moved to the transitional unit. It took forever - we had to wait for discharge and for a room to be available and we didn't get more until 4:30pm.

But - Lucy is doing well. She has been waking up early for feeds and eating on average of 70ml. She has no IVs anymore and doesn't need her nose feed either. Her last dose of Tylenol was at 9am and so far she doesn't seem to need it.

Lucy is on a once daily diuretic that we might have to do at home too. She looks great today and I'm hoping it will only be for a few days.

As soon as we got here, we asked what it will take to get her home. Basically, she needs to eat 60ml around every three hours. She needs to be checked by the doctors and if she stays on the diuretics, then we need to prove to them we can give it. I don't want to jinx it, but for the first time, I feel like our move home is VERY close...

Lucy got a much needed bath from the nurse and myself - wow she can scream now! But she was crusty and needed it. I may be wrong but I swear she has some curl or at least some wave to her hair...we just have to wait and see!

I feel like we are sooooo close to being able to go home - keep it up Lucy!

Lucy is Better

Lucy is rocking it out today! She was able to have all but one IV removed. Her drainage tube is out and she is just left with two monitors.

She has also been eating out of a bottle really well! Lucy is doing so well they almost moved us to the transitional unit today, but the doctor wanted one more night here and plan to move her tomorrow.

Lucy is a little puffy and they did give her a dose of diuretics. Puffiness is expected after surgery. Each hour she looks better and better. They really tried to not put too much tape on her as she is for sure allergic to tape and band aids. Luckily her red marks seem to disappear quickly.

The only thing we have to get use to is now we need to pick her up by her butt and head only - no arm pit grabs because of her surgery incision. That will take some practice. Also we can't burp her like normal until it heals - so that will take practice as well.

We are so happy that we are moving quickly into recovery - now we just need to find out what it will take to get her home!

Lucy is Healing

Sorry for the delay! It has been a day to say the least! Lucy got out of surgery around 1:00pm and the doctor said everything worked out great. They did have to put an IV in her groin because the one in her neck didn't take. Also it ended up taking them a little longer because the doctor needed more time to find the perfect place to clap her artery and sew it without having a drop in blood pressure.

We met with the surgeon afterwards and he showed us what he cut out. It looked like a noodle. Ha! But you could see the narrowing and he was convinced if the duct would have closed on its own, it would have caused major issues. Makes you wonder if that was the reason it never closed.

We finally were able to see her at 2:30pm this afternoon and she looked as expected. I'm not going to lie but I have major issues with seeing her like that. But she looked comfortable and she was in really good hands. All the doctors and the surgeon and a ton of other people were 100% focused on little Lucy.

I decided I needed to go home and wait to be around Lucy until tomorrow when she will have a lot less items plugged into her and her breathing tube will be out as well. They actually hope to try bottle feeding tonight or early tomorrow morning sometime. Daddy decided to stay behind and I assume I will get a full report when he returns tonight.

We made it through and we are SO ready for Lucy to recover and GET HER HOME!!!

Away She Goes

Lucy is with the surgical team now. We should get updates on a regular basis and they are estimating she will be out by noon.

Not going to lie, very hard for mommy and daddy this morning but she is in good hands.

We are set for the big S

We are set for surgery tomorrow. We had numerous tests/meetings/tours and whatnot that occurred today. She had an EKG, blood work, a fresh IV put in, and everything. We met with the cardiologists, the surgeon, the surgical nurses, the PICU team, the wellness people and I can't even remember who else. Heck word got around she was going into surgery and we even had our favorite NICU nurse stop in. I think we could have made a drinking game out of "Do you have any questions?" But everyone did an excellent job at explaining everything and preparing us as much as possible.

What the difference between the NICU and the PICU? NICU is solely for babies - PICU is for pediatrics ICU but the PICU here has a special wing specifically for cardiology. Specially trained nurses etc. I believe they are top ranked too for pediatric cardiology in the nation.

The hardest thing to prepare for is what she will have/look like after the surgery. She will have her incision which was estimated at 3 inches today but it will be stitched on the inside and glued on the outside - who knew? She will have a drainage tube. She will have a catheter in at least for a little bit. Then they wanted to warn us - she might have a second IV in her neck - mainly for monitoring purposes and then she might still have her breathing tube and ventilator in for a period afterwards. Which I heard is the hardest thing to see. But most of that stuff should be gone within 24 hours. Lucy will be kept at a comfortable comatose state for awhile afterwards and pain management is number one in their book. Who knows how many monitors and cords will be attached to her but we are at least use to that part.

At midnight she will go on IV fluids for the morning. Hopefully she isn't too crabby tonight by being restricted from eating but I won't mind holding her. :)

We are as prepared as you can be and just anxious to get it done and Lucy into recovery!

Our little Lucy will get her heart fixed tomorrow...

Sleeping Zombie and the PLAN

Lucy is a sleeping zombie. Besides being messed with by the nurses and doctors and whomever else wants to poke and prod her - she is out cold. Don't worry, I keep asking if it's ok and it is. Between her being fed every three hours whether she is awake or not and her heart issues - both lead to zombie like sleep.

Speaking of eating - her sleepiness is making it basically impossible to nurse - we have started her on bottles and even those are a huge challenge. I think the most she ate off a bottle was half an ounce. I think they said in rounds - she is only getting about 9% of her daily amount NOT through the feeding tube. I'm hoping once she feels better and is awake - she might have enough motivation to eat!

The Plan...

Lucy will undergo heart surgery thursday morning. They will fix her duct as well as the part of the aorta artery that is narrowing. Good news is both are outside the heart and should be able to be fixed through an incision in between two ribs on her left side. She will also have a drainage tube for a few days after.

The surgery will take about 2 hours or about 4 hours total with everything from putting her under to waking her up. When she does wake up, she will be on pain meds and monitored closely.

Right now, as we understand it, she will be in the ICU again for 3 to 4 days - then we start over in the transitional unit with getting her to feed so she can go home. My guess is our goal will be to get home by next Friday.

Tomorrow is a big day of meeting with a lot of doctors and getting the final plan. She is in really good care here. We are just happy they decided to move forward now instead of later!

Couple of side notes...

Mom and Darrell leave tomorrow morning and it was hard to say goodbye. But hopefully next time they see Lucy - she won't be connected to a bunch of monitors! We can't thank them enough for their help and being such good sports through this roller coaster! We owe them big!

Val flies in tomorrow and we are super excited for her visit! It will be nice to be continuing being surrounded by friends and family!

Lastly - our neighbors are awesome. Our next door neighbors and across the street neighbors have given or offered help on numerous occasions. One gave Heidi and Lucy presents that included matching big sister and little sister shirts. I can't wait for that photo session! Then our next door neighbor makes jewelry and made Heidi and I necklaces. It's perfect! I love it! We are so happy we live in such a great neighborhood!

Ok - should get to sleep...if I can :) we have a big next couple of days!

I'm Tired...

I survived night one and day one in the transitional unit. We basically went from having nurses wanting and needing to do everything to now the nurses are hands off except to make her mad.

I have decided Lucy has flip flopped her days and nights and I was up basically all night. She wasn't crabby - she just didn't want to chill in the crib.

Nursing has slowly begun - when she is awake, it goes really well. When she is sleeping - a tornado couldn't wake her up!

She did have her other fetal echo today and the team of doctors are working on her plan. I will let everyone know when we know.

I'm preparing for another night ahead of me - keep your fingers crossed that I maybe get an hour of sleep! Everything is heading in the right direction! Right now two main things:

1. Get the plan of attack from the heart doctors team

2. Get nursing up to full speed so they can remove her feeding tube!

So long NICU

So long NICU - after 11 days - we are moving to the transitional unit! Lucy is off her IV - off oxygen and almost to being fed (through her nose) a little more than 2 ounces.

Also - they will begin allowing me to breast feed! Which is huge! It will be baby steps - like for 5 minutes at first maybe once a day and grow from there.

Lucy is receiving diuretics twice a day now orally and I hope to learn how to give it to her in the next day or so.

She will have another echo on Monday but as of this morning her murmur was still there. We are in the hands of the heart doctors and I think they are pretty good hands :)

Here are a couple of pictures from this morning - I think looks BEAUTIFUL!

Progress and Oktoberfest

The doctors decided to move her fetal echo up to yesterday (Friday) - and we didn't get a full update until this morning from the cardiologists and the doctors. We were starting to get the feeling that our team of doctors thought it was connected to the heart and our cardiologists disagreed. BUT this morning - everyone is on the same page.

Basically Lucy has three items they are watching on her heart.

1. An abnormal aortic valve. This is NOT connected to the breathing thing and might not ever be a problem. They will continue to monitor it as she grows and gets older - it might mean nothing or it could mean surgery. They can't say for sure nor are they concerned about it.

2. A narrowing section in her artery surrounding her heart. Its very minor and they have no concern. But like the valve, they want to continue to watch it and monitor it. It could mean they have to do something in the future, but nothing right now and it isn't a threat. But it is connected to the 3rd item.

3. The open duct - it is still open and hanging out. It still might close on its own - but they agree this is probably one of the main factors of her quick breathing and not being able to handle her fluids in her body. This is connected to the narrowing artery because they want to make sure when/if the duct does close on its own, it doesn't close goofy on the artery or make the narrowing section more of a problem. As of right now, for the duct, they do not plan to have a procedure or anything soon. They want to continue to have fetal echos and keep checking (and hoping) it closes on its own. Maybe down the road we will have to close it or I believe IF we have to have any surgery - they can fix all things at once but ONLY IF needed.

Our next echo will be on Monday.

Their theory is basically - they think in the beginning - she didn't get squeezed enough and was born with so much fluid. Heck - look back at her first pictures - she doesn't look right - her belly is all bloated and she is too. Now because her heart is a tad bit different - you combo extra fluid with a different heart and you have quick breathing and the issues Lucy is having.

The plan is to continue diuretics to get the excess fluid out and then hopefully after a few more doses - she can maintain it on her own. We will probably go home with some doses of diuretics but its not something she can stay on for too long as diuretics can be tough on organs.

As now she has been on diuretics for 3 days - her breathing has maintained in the 60s, if not a little lower and her blood is circulating great. Today they officially said they will take her off the oxygen and see if she can maintain the breathing and other levels as they think she can. Heck, even right now, she is crying and she is taking huge deep breaths and she has some LUNGS on her!

Next steps are feeds. She is on only 1 ounce through her nose still, but they don't want to shock her system - so they will increase a little bit, but not much today. Then if Lucy maintains off the oxygen great, then they will increases feeds tomorrow and take her off her IV. If that all goes well, then we could try bottle feeding on Monday or Tuesday and that would be the final step to go and MAYBE - just MAYBE we can take her home! I know here, they do go from the NICU to what they call Rainbow 4/Step Down or the transitional unit. I'm hoping that happens when we move to bottle feeding!

Our goal - get her home! We have a LOT of doctor visits in the future - but so far we are very impressed and love the doctors here. They love Lucy too!

At least now, we can hold her and that helps a ton. We also had a first of Heidi holding Lucy. She didn't want to do it on her own - I think all the cords scared her. But she was all about it holding her with dad. Love it!

I'm on Chris' laptop and it won't keep my pictures facing the correct way. Sorry - you have to have wrong facing pictures.

To recharge our batteries, we decided to go to the local Oktoberfest last night. It was fun! I wasn't able to partake in the beer - still on pain meds - heck - I had a 10 pound baby! And someone needed to drive the happy gang around and I was happy to do so. 

Heidi was ALL about dancing and doing the polka! She had a blast and kept going up to each one of us to take her around the dance floor. It was good to get out and I think everyone had fun! I think it was what Heidi needed too. She asked this morning if she could go back :) 

Our Lucy is getting better! I'm hoping we continue this positive path and we can actually take her home!!! 

Pictures

I thought I would download the very few pictures I have from our nice camera from the last two days. This no flash is killing me - 90% of my pictures are blurry (Christina help! :) )

A couple of our bubble baby...

And once again - we were so excited for Lucy today - no bubble! Plus we got to hold her again and she was wide awake and just starring at us. Pretty cool. :)

 I love it when she sleeps - she looks so chunky and cozy!!!

 

Progress!

We have progress! After meeting with the lung doctors, they decided last night to put her on a dose of diuretics and clear out her fluid. Her chest xray came back wetter than the previous one, so we knew she wasn't moving fluid at all like she should. I guess she was a peeing machine last night and even lost some weight. Since they gave her the diuretics - her breathing slowed way down, even was clocked in the 60s this morning, but typically hanging out in the 80s. She was able to move back to her nose thingy and they aren't pumping her full of oxygen like they were before. She is at the same pressure or amount as room air.

The big change is now they DO think its related to her heart. I did mis speak - we aren't waiting for a valve to close - its a duct - valve - duct - whatever - I was never good at science. When the baby is in the womb - there is no need for the lungs. So the heart has a duct that basically bypasses the lungs and keeps the blood flowing. After the baby is born, the duct is suppose to close on its own about 3 days after. Some babies take longer - aka Lucy. They are going to check her heart again on Monday to see if it has closed. If it hasn't closed by then, there is a slight chance for some minor surgery. Until then, they plan to keep giving her treatments of diuretics and watching everything else just to be on the safe side.

We were actually allowed to hold her and she was taking some deep breaths which is the first time we have noticed that. Also, when we hold her, all her bells and alarms don't go off like they did in the past. At least they feel more confident we are heading in the right direction. They said normally a slow closing duct isn't connected to something like fast breathing but in Lucy's case it is.

Its so nice for her not to be in the bubble and we can have more interaction! Come on close duct!

Bubble Baby Lucy

We are just hanging out here in the NICU. An update on our bubble baby, she still is breathing very quickly and her lungs are very wet. She isn't going backwards with progress but she isn't moving forward either. She is very content and happy, just breaths quickly. They are bringing in a lung specialist today to join the large NICU group of doctors and specialists. I consider myself to be a half way of an intelligent person - but you get in this room of the 15 doctors and well - I find myself saying stupid words like awesome and making really bad jokes. Awesome.

The other item she has is a heart murmur - very minor and isn't connected to the breathing issue. But since she is here, they are doing fetal echos and other tests. She does have a narrowing of an artery and her valve that should have closed by now, still hasn't. (All babies are born with it open) They aren't too concerned about why it isn't closed yet, but they just want to make sure when it does close, it doesn't affect the section of the artery that is narrow. That is my translation of the heart doctors - they would probably laugh at my interpretation. 

Let's talk numbers - here is a snapshot of her monitor. The two numbers we have been watching are the 104 and the 97. The 104 is her breathing. It should be in the 50 to 60 range. yep. She is breathing a wee bit fast. The second number of 97 is how her blood is oxygenating (I'm not sure if that is the correct word - but run with it) It needs to be above 95. So she is good there, BUT its only because she is in the bubble. She needs to be able to keep that number on her own and be breathing slower. The other numbers are 131 is heartrate - nice and calm and good. and the 94 over 55 I think is her blood pressure which is good. So when we watch the monitor, we care about really only two we care about.

I can't take a lot of pictures right now - pretty dark room - no flash rule and well - she is chilling in a bubble. She still looks happy as a clam. She is not distressed at all. I guess her weight is up too - my mom asked the nurses if she thought this was a spa or something - just hanging out. We really hope for some progress here in the next few days - but as of today - I think we will be hanging out for awhile. At least the room is large and very nice and all the nurses and doctors have been amazing. Don't get me wrong - all we want is Lucy to be home and healthy - but at least she is in really good hands and honestly - she is one content happy kiddo chillin in her bubble.

I had to take a picture of her tiny cute foot sticking out of her bubble. She has such small little toes - so cute!

Our bubble baby Lucy...